(For those who don't know, "PM" stands for "Personal Message", "IP" stands for "Inpatient", as in a hospital; generally shorter term and less quality care for those with longstanding eating disorders.)
I asked for and received permission to post this woman's personal facebook message to me on this blog. First and foremost, I am going to give her (and detail here) all I know about accessing care with:
- shitty insurance
- Medicare
- no insurance whatsoever
That said - I cannot TELL you how many messages, emails, calls, letters I get asking for help of this nature. Probably because of what she mentioned - that I was once in a position with my insurance company not covering desperately needed care, and that I fund raised. My situation is unique, and it worked out. I wasn't anticipating telling that story so soon, so I'm going to leave it for another day, but trust me - it was a string of miracles, and (god it's 5:30 AM and I have not slept and this may be the cheesiest thing I have EVER said in my life) those miracles were people. Just like you. With knowledge and information and power.
So let's help her, shall we? I'll get to what I know:
- Shitty Insurance - This was my situation. The National Eating Disorders Association has a whole page detailing how you can fight your insurance company's decisions; on appeals, on everything. But what ultimately saved me was working with a fantastic lawyer, whom many of you have likely heard of, named Lisa Kantor. I trust her with my life. I would not hesitate to contact her firm and see what they can do for you, even if you cannot afford to pay a lawyer. Just try it, and trust me. You can attempt to host your own fund raiser if the need be; this is difficult and tricky. Mine was extremely successful and still only raised about $10,000 - less than 10 days of residential treatment at most facilities, when most places require a minimum of at least 45 days (and that's really fucking minimal). Also a Q & A with Lisa Kantor I found about how to get coverage for your ED. Now, please, please, please - if you have anything to add, add it in the comments section, because I got lucky, and this is as far as I can take you with regard to Shitty Insurance.
- Medicare - This I know a little about, because of my Shitty Insurance situation. As far as I know, the following centers that specialize in Eating Disorders accept Medicare (please add any that you know of that I have missed): The Klarman Center at McClean Hospital, River Oaks Hospital in New Orleans, Rogers Memorial Hospital in Wisconsin (am I wrong about this? It says they do in one place and that they don't on another site), Walden Behavioral Health in Massachusetts (says they accept Medicare A and Medicare B as well as various Medicaid plans). That was all I could find in my search just now. PLEASE add centers you know of. The crappy thing is that all of the centers I have listed are either Inpatient or known to be similar to Inpatient. I wish I could help more, friend, but this is all I was able to find on short notice. I will email Lisa and ask her what she knows, if anything in addition to the above Q & A, and edit this post if I find anything more out.
- No Insurance Whatsoever - Laughably, this is almost easier than Medicare. Columbia's NYSPI program has a research unit that provides FREE inpatient care to those who are eligible for their studies. Google around and try to find similar things in other places, because I know they exist - again, I will edit this entry once I find out more myself. Again, you can attempt to fund raise. Some people's families, who are able, take out of their retirement or pay out of pocket (this is almost impossible for most, and for those for whom it IS possible, many have already exhausted all of their own and their family's resources with previous treatment, and it is no longer possible - and they find themselves in a seemingly impossible situation. This is where we put our heads together and work. Hard.)
Now that I've covered those basics, I'm going to rant about what happens to people who have been sick a long while with eating disorders. Often, they can't hold jobs, which means as adults they lose their insurance, and if they're LUCKY wind up on Medicare, which means they only have access to certain programs, and while it's brilliant of those programs to accept Medicare this means their options are sorely limited - which is not good for those with chronic, persistent, severe eating disorders. Often, Inpatient units are extremely short term and based around weight gain/medical stabilization, which is not the only problem (to say the least) when it comes to complex, longstanding eating disorders. Not to mention, in my personal experiences and observations with inpatient treatment (and bouncing in and out of hospitals) it can often be more damaging to the body (that is then refeeding, getting sick again, refeeding, getting sick again) - more of a shock to an already damaged system - than staying sick alone would be. Often people with Anorexia Nervosa become hypermetabolic (which, long story short, means that their metabolisms work on overdrive and make it harder for them to gain weight and easier to lose - when gaining weight is already a tremendous obstacle mentally and emotionally for sufferers of this disease), and while hospitalized, people with Anorexia often become hypermetabolic - making it even crazier to hospitalize and then release them so quickly, as they often just lose all of the weight AND THEN SOME when discharged, which puts them in an even more dangerous position than before.
It would be so fucked up that it's funny, except it's not funny. Not at all. This is a short rant, because I want to keep the focus on this particular woman.
I request your help for this young woman who wants to get herself some help. Any ideas from anyone - especially those who are knowledgeable and have personal experience - are more than welcome.
Thank you again for your time,
Sofia
You are awesome for putting together all these resources! I hope it helps a lot of people. For me the most terrifying part of seeking any kind of treatment for anything is always "how am I going to pay for that?" and that's especially true for mental health and ED stuff.
ReplyDeleteI really hope that the woman who pm'd you is able to get the help she needs.
Thanks Lily! I hope it helps a few people too. It's so fucking painstaking doing all of this research yourself when you're needing help, and very hard to come across what's legitimate and what's not, and you know. When you need help asap it's kind of a pain in the ass. I remember.
DeleteI hate that that's one of your first thoughts when you consider seeking treatment - how telling is that?
And thank you for the well wishes for this particular woman :) We're keeping in touch and it seems like she may have to go with something inpatient esque, but another little helpful tidbit is that some treatment facilities have their inpatient/residential units combined and sometimes (I remember at Laureate it was kind of like this) it's close to the same thing. We'll figure it out. I think there's also something to recognizing that no one treatment facility is going to be The Thing That Fixes It. I wish it could be, but I've learned that for sure over the years. I got lucky in that there happened to be people working at a certain place at a certain time who already knew me and chose not to "give up" when I needed people to believe in me, and that's made all the difference. I wish that were a universal experience. But it's really a matter I think of learning what you can, stabilizing of course, and then using all that you've learned as best you can...and then some, obviously. So obnoxiously complicated.